The Believe Project: Fighting for survival through kidney cancer

Is there some way of saying ‘It’s been a challenging time?” No, probably not. And besides, challenging is a euphemism; a gentled version of what I wish to convey.

12 months ago I heard the words “you have Cancer” for the first time. I still get shivers just thinking about what is happening inside my body and how much my life has changed based on those dreaded 3 words. But first and foremost I want you to know about ME, the me before the Cancer, I want you to look past the disease for a moment and come into my world. This is my journey but I know I am not alone in this fight.

Let’s start from the beginning shall we, my name is Dean and 33 years ago I was given the greatest gift of all -life. An opportunity to live and experience this amazing and beautiful world we were given so abundantly. And it is with this very attitude that I have lived my life.

I have always been a very positive person, embracing each day. My friends and family will certainly agree that there really isn’t ever a dull moment when I’m around. I have had the privilege of travelling the world and prior to my diagnosis, I ran a successful engineering business. I guess I could say life was good. I married my stunning wife two years ago, it was the wedding of our dreams and we were so fulfilled in knowing that we were now planning the next stage of our lives together.

In May 2013, I was getting ready to compete in a fitness competition. For anyone who has ever done this before, it involves a very strict eating plan and training schedule. I was committed and excited for the challenge. My reason for mentioning this is because this is really when I saw the peak of my health and fitness, I was consciously looking after myself- little did I know that this feeling of euphoria wouldn’t last long.

During the competition is when I got my first signs that something wasn’t quite right, I was passing blood in my urine and suffering from severe back pain. We originally thought it was all the supplements I was on that were causing the clots and pain; so like many, I ignored the signs and continued best I could. After the competition (in which I did really well I might add!) The intensity of my training reduced and the blood in my urine appeared only intermittently. I didn’t think too much of it as I still thought it was a minor side-effect of the training supplements I was still on – whenever I stopped taking my protein powders I found that I would not get the pain as much and blood was minimal.

It wasn’t long before the blood clots returned in my urine, this time they were outrageously large and excruciatingly painful. I honestly didn’t even think I could pass something that size through my urinary tract.

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In early November 2013, I booked in to see my doctor who immediately organised an ultrasound that revealed a large shadow appearing within the kidney. I was then booked-in to have a CT scan and to see an urologist.
At this stage I was not too stressed; I thought a few antibiotics will do the trick and I’ll be back to normal in no time. I met with the urologist and within a few minutes of being shown the images I was told that I had kidney cancer. So here we are, we have come full circle.
“You have Cancer” – what’s the appropriate response to that? In my head I thought “No, I don’t, you must be wrong..” but I didn’t say it out loud. The tears from my wife brought me into the reality that this was happening – to me.

The specialists referred me to go and get a blood test and a chest x-ray to see if there were any signs of spread. I was in shock, I didn’t know how to react, everything stopped and reset and I didn’t know what was going on. Despite no evidence of metastasis, I had a malignant tumour in one of my kidneys and my life was flashing before my eyes. I had transformed from a strong, fit and healthy person into an anxious ball of nerves suffering from frequent panic attacks.

In February 2014 I underwent surgery for a laparoscopic nephrectomy to remove my right Kidney. The surgery was considered a success at the time and margins were given the all clear meaning there were no signs of further spread.

My kidney that was removed was sent through to Histology to further examine the cancer, which was defined as Clear Cell Renal Cell Carcinoma, type PT3. It had just spread outside of the kidney tissue into Grota’s fascia the fatty lining of the kidney. It was classified as a grade 4 cancer with very abnormal looking cells under the microscope. In laymen’s terms, I had a tumour the size of a tennis ball which was millimetres away from breaking the lining of my kidney. Terrifying stuff!!

Due to the aggressive nature of the cancer I was told that my situation would be reviewed every 3 months for the next two years so that if the cancer came back, they could jump straight onto it. 6 weeks after I had my surgery I was sent out to get a PET scan done, I had never heard of this scan. Very similar to a CT and MRI scan put together, it is a scan that involves the patient being injected with radioactive glucose (sugar) prior to undergoing a full body scan. The radioactive sugar causes the cancer cells in the body to light up brightly. My results came back clear and there was a big sigh of relief.

I was back doing what I loved again, training hard, socialising with friends and generally feeling good. My engineering company was doing well and all my employees were in top form. My June scan results were all clear and I felt on top of the world again, inspired to make the most of my second chance at life.

It would only take five weeks for this dream situation to turn into a nightmare. After a sudden onset of severe abdominal pain I was rushed to Sandringham Hospital. An emergency CT scan revealed the presence of at least two lesions.
The results were sent to my oncologist who, upon viewing them, booked me in for the earliest PET scan session available, which was four days later. Another two days after that, the results of the PET scan showed that I had at least 9 malignant lesions growing aggressively inside me and with this information also came the news that the condition could not be treated at all. The lesions were said to be too close to my vital organs and therefore could not be removed. The doctors didn’t have a ‘solution’- this was when a timeline was put onto my life. They said “you have 12 months” – what does that even mean? 12 months to tick things off my bucket list? How are you supposed to come to terms with that? Just like anyone else I have dreams, hopes, a beautiful wife and so much to live for. 12 months, sorry Doc but that doesn’t work for me.

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So here we are, as you can see, it has been quite an emotional roller coaster. Some days the pain returns and it’s only natural for my mind to wonder what’s going on in there. Although it can be tough at times to live with this set of circumstances, I am taking a practical approach in being proactive and positive.As I dealt with this news, it was decided that that rather than not provide any treatment at all, they would prescribe some medicine that may help with the particular type of cancer I had. Considered a form of biological treatment called Sunitinib, the drug is very strong with an array of severe side effects including fertility ramifications.
I must take the medication for four weeks, then stop it for two weeks and continue that cycle. It does not eradicate the cancer; rather it aims to inhibit its growth. During the two weeks off, the tumours are allowed to grow.

Aside from the prescribed medication, I am also exploring alternative treatments to give myself the strongest chance at beating this. I have started on a 100% alkaline diet…ok so maybe more like 80% because every now and then there is nothing like a bit of rice! But hey, I still need to enjoy this life, no matter however long it is.

I’m not afraid of dying. No really, I believe that if it is my time then I shall have to go but what scares me is the look of fear and sadness in the eyes of those I love. My beautiful wife, my mother, family and friends – maybe I won’t be able to live out all my dreams, maybe I won’t have a child or leave a legacy. But then maybe this is my legacy. Maybe by sharing my story, my journey, we will find out if this can be beaten by belief. I believe, I believe in the love of everyone around me and I believe that this disease will not consume me. I believe now is not my time.

Find out more about Dean’s story here or donate now to help him access vital treatments.

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